Tag Archives: Do No Harm

Malaise…Lets discuss this!

 

 

Malaise…

Lets discuss this!

 

I will point out again like I have before, remember, im coming from an RN point of view for the benefit of the patients because I was an active RN until I was no longer able to work because of M.E.

I actually couldn’t respond from a patient point of view because I would lose focus on the subject because I would end up sounding more like an angry patient than a nurse who is very very disappointed because of the lack of the standard of patient care in regards to this illness.

 

Do you know what “Malaise” is?

 

Before I get into detail about what “Malaise” is, I just want to point out a few things.

I just recently did another post related to “Malaise”, It probably sounded… very…severely opinionated because of what I named the post.

The post could’ve sounded like a controversy type thing, then even more so.

The post was about the symptom described on the CDC 1994 Fukuda Definition of CFS “Post-Exertional Malaise lasting more than 24 hours.”

I did that post for a reason, the reason being, because I don’t think people including the physicians are seeing what the significance is, of this one little word called “Malaise.”

 

Clarification!

I will also clarify I am NOT a “word” nerd, but I am a stickler when it comes to a level of patient care. That level should not be compromised at all, especially this particular example because so many patients have become disabled and homebound because of the misinterpretation of this symptom because of the use of that little word called “malaise” that was the wrong word to use.

Quite frankly, in my personal and professional opinion this was unacceptable, this was negligent, this was nothing less than a crime!

Patients have suffered to the extent that no one should ever have to suffer because of basic incompetence and lack of knowledge of medical terminology!

This was a disgrace!

Shame on the late Dr. Stephen Straus!

Shame on Dr Keiji Fukuda!

 

What Is Malaise?

 

So, the question is, Do you know what “Malaise” really is?

I searched even further than I did for the original post for meanings of “Malaise” from other dictionaries, including medical dictionaries and not just Websters, etc.. to explain with it is and why malaise doesn’t even touch what we physically feel with a 10 foot pole!

 

Medical-Dictionary The Free Dictionary

Medical-Dictionary Free Dictionary has 8 different definitions for “Malaise”
from 9 different Medical and Nursing references which are listed below.
So there are multiple sources, no bias.

 

malaise /mal·aise/ (mal-āz´)

a vague feeling of discomfort.

Dorland’s Medical Dictionary for Health Consumers. © 2007 by Saunders, an imprint of Elsevier, Inc. All rights reserved.

 

mal·aise (ma-laz, -lez)
n.
A vague feeling of bodily discomfort, as at the beginning of an illness.

The American Heritage® Medical Dictionary Copyright © 2007, 2004 by Houghton Mifflin Company. Published by Houghton Mifflin Company. All rights reserved.

 

malaise

Etymology: Fr, discomfort,

a vague uneasy feeling of body weakness, distress, or discomfort, often marking the onset of and persisting throughout a disease.

Mosby’s Medical Dictionary, 8th edition. © 2009, Elsevier.

 

malaise

[malaz]

malaise general term for a vague feeling of generalized discomfort.

Segen’s Medical Dictionary. © 2012 Farlex, Inc. All rights reserved.

 

malaise (melāz´)

n a general feeling of discomfort or uneasiness, often the first indication of an infection or other disease.

Mosby’s Dental Dictionary, 2nd edition. © 2008 Elsevier, Inc. All rights reserved.

 

malaise

Internal medicine A vague feeling of general discomfort, sensed as something “just ain’t right”.

McGraw-Hill Concise Dictionary of Modern Medicine.
© 2002 by The McGraw-Hill Companies, Inc.

 

ma·laise (mă-lāz’),

A feeling of general discomfort or uneasiness, an “out-of-sorts feeling, often the first indication of an infection or other disease.

[Fr. discomfort]
Farlex Partner Medical Dictionary © Farlex 2012

 

ma·laise (mă-lāz’)

A feeling of general discomfort or uneasiness, an “out of sorts”feeling, often the first indication of an infection or other disease.

Medical Dictionary for the Health Professions and Nursing © Farlex 2012

 

ma laise (ma-laz)

A feeling of general discomfort or uneasiness, may be a first indication disease.

Medical Dictionary for the Dental Professions © Farlex 2012

 

Is the “Malaise described above YOUR symptom or is it something else?

My question is,  is the symptom “Malaise” in the

1994 Fukuda Defintion for CFS

symptom that is called

“Post-Exertional Malaise lasting more than 24 hours”

the SAME Malaise in any of the definitions for Malaise from the different medical and nursing sources I posted above, that same “Malaise” you experience?

 

Scratching My Head?!?!?…..

 

Did Dr. Keiji Fukuda or did Dr. Stephen Straus publish their own dictionary that we know of that gave their own meaning for the word “Malaise”?

I did do a search just to double check that and I did not find a Fukuda or Straus Medical Dictionary!

But are we absolutely sure about that?

Could their dictionary be out of print?

Do you think we need to contact the librarian at the NIH to double check that just to make sure?

Do you think we need to contact Dr. Keiji Fukuda over at the WHO to double check with him?

 

Now That We Have That Established!

 

Since I pointed this issue out about the word “Malaise”, is it easy to understand and see why physicians and other healthcare practitioners did not recognize this symptom as a key hallmark symptom of the illness and possibly and probably dismissed it?

Since “Post-Exertional Malaise Lasting More Than 24 hours” was originally listed as the last symptom on the list of the The CDC 1994 Fukuda Definition for CFS that was published in 1994, would it be even more understandable why it was probably missed as the key hallmark symptom of the illness after reading the meaning of the word “Malaise” from all of the different medical sources?

 

PLEASE LEAVE YOUR FEEDBACK!

 

If you happen to be reading this blog post today, please leave some feedback to let us know if the “Malaise” is the same symptom you experience according to the definitions in the medical and nursing sources that I listed above.

Is your symptom the same symptom that is listed in the 1994 Fukuda Definition for CFS“Post Exertional Malaise lasting more than 24 hours” or would you call your symptom something different or a different medical word or description?

 

In other words,

 

Does “MALAISE” have anything to do with your symptom that you experience after activity whether trivial, cognitive, exertional, or exercise?

Please let us know what YOU think the symptom should actually be “called” that you experience!

Thanks so much in advance for your feedback!

I do respond to the posts because I am a conversationalist because I am a people person!  To be a nurse, you have to be a people person.  Even though im not active in the RN field at this time, im still that people person. Once a nurse always a nurse!

So if you do respond in the comments, I will reply back to you! 🙂

Thanks again so much!

 

“The Other Side Of The Stretcher” (c) 2014

This blog is not for medical advice.
For medical advice, you must speak with your physician!


Why The NIH Pathways To Prevention Systematic Review For M.E. and CFS Is Negligent!

Why The NIH Pathways To Prevention Systematic Review For M.E. and CFS Is Negligent!

An Explanation!

 

First I want to say, I became an Registered Nurse in 1985. So my point of view is not of a patient, it is as of an R.N.

When I decided to take a look at the Pathways to Prevention Systematic Review for M.E. I saw right away that it was clearly negligent and harmful to M.E. patients.

I then thought the medical people who have this illness need to start speaking up about the negligence we have witnessed the last 20+ years. What I wrote below is also part of the letters that I also have written Beth Collins Sharpe AHRQ, and Dr. Francis Collins.

The authors who were paid to write the NIH Pathways To Prevention (P2P) Systematic For M.E. obviously did not have M.E. expertise, because they wrote a negligent document recommending unsafe non medical treatment that is harmful to M.E. patients.

Proof of Negligence, Bioethics Violations, and Harm associated with the NIH P2P Study For M.E. and CFS!

NIH P2P Systematic Review For M.E. published online 5/2/2014.

The NIH P2P systematic review was supposed to be designed to further research.

This review will not further research as it contains non medical therapy which is harmful to M.E. patients.

The authors of this review did not exclude non-medical therapy GET/Grade Exercise Therapy which is harmful to M.E. and CFS patients.

The authors were negligent in not excluding the non-medical therapy of GET/Graded Exercise Therapy from the NIH P2P review for M.E. and CFS patients as the results of the 3 different research groups were known before publishing date of May 2nd, 2014.

 

Evidence used for the NIH P2P Systematic Review cited 6 definitions for M.E. and CFS:

Centers for Disease Control and Prevention Fukuda et al.,1994
Canadian Carruthers et al., 2003
Revised Canadian Jason et al., 2010
International Consensus Statement Carruthers et al., 2011
London Dowsett, 1994
Oxford Sharpe, et al. 1991

All of cited definitions except the Oxford definition point out post activity exacerbation of symptoms after trivial amount of activity, physical or mental fatigue or muscle weakness after minimal exertion which may persist long after exertion ends, Post Exertional Neuro-Immune Exhaustion, Post Exertional Malaise.

The authors of the NIH P2P Systematic Review for M.E. and CFS allowed The Oxford definition criteria of GET/Graded Exercise Therapy to “slip through the cracks” and to be included in the systematic review as one of the non-medical treatments for M.E. and CFS.

Allowing Oxford criteria or recommendations was NEGLIGENCE of the authors, because it does not include that key piece of data in the definition which states that GET or Graded Exercise Therapy causes a post activity, whether physical or cognitive, exacerbation symptoms, long after exertion ends, Post Exertional Neuro-Immune Exhaustion, or Post Exertional Malaise.

The NIH P2P Review for M.E. and CFS was published on May 2nd, 2014, which was after 3 CPET VO2 Max Studies, that were completed by 3 different research teams stated below:

Dr. Enlander of the Mt Sinai Medical Center in NYC: November 20th, 2013: “Incorrect Govt Criteria Hurts Chronic Fatigue Syndrome Patients, New Research Finds:” http://bit.ly/1hX7MFm

Dr. Snell and Dr VanNess of the Workwell Foundation in California: June 23rd, 2013
http://ptjournal.apta.org/content/early/2013/06/26/ptj.20110368.short
http://www.workwellfoundation.org/research-and-latest-news/

Dr.Betsy Keller in Ithaca NY: September 17, 2013
“A FOREIGN & ILLOGICAL RESULT” DR. B KELLER ON EXERCISE TESTING IN ME CFS”
http://www.prohealth.com/library/showarticle.cfm?libid=18349
http://beforeitsnews.com/health/2013/10/exercise-physiologist-prof-betsy-keller-mecfs-patients-will-respond-abnormally-to-2-day-cardiopulmonary-exercise-tests-2-2508464.html

All 3 different research groups, in 3 different centers, where CPET VO2 Max testing using the Stevens Protocol was performed, all resulted in the same findings!

Findings:

-Abnormal Recovery Response to Aerobic Exercise- up to 7 days

-Decreased Functional Capacity or a drop in VO2 Max during test #2, 24 hours after test #1 due to metabolic abnormalities, thus causing post activity or exercise exacerbation of symptoms, PEM, PENE

-M.E. and CFS participants were unable to reproduce most physiological measures at both maximal and ventilatory threshold intensities during a CPET performed 24 hours after a prior maximal exercise test.

-Decrease in anaerobic threshold from test 1 to test 2 causing a decrease or lower threshold for physical activity.

-Results from the second test indicate the presence of a CFS related post-exertional fatigue

-Significant Post Exertional Amplification of Symptoms.

-Ability to generate energy from the aerobic system is significantly impaired.

These results correlate with Dr. Enlander’s statement- “INCORRECT GOVERNMENT CRITERIA IS HARMFUL TO CHRONIC FATIGUE SYNDROME PATIENTS, NEW RESEARCH FINDS!”

These results correlated with what patients have said for the last 30 years.

THE RESULTS OF THE 3 CPET VO2 MAX STUDIES PERFORMED BY THE 3 DIFFERENT RESEARCH GROUPS, SHOW THAT THE 1991 OXFORD DEFINTION FOR CFS IS OUT OF DATE, OBSOLETE, DOES NOT APPLY TO ME OR CFS, AND IS HARMFUL TO PATIENTS WITH ME AND CFS!

Because of these results, there is no way that Oxford Definition criteria can be used in good conscience at this point, because of clear bioethical issues, negligence by the authors, and if allowed to be used will be a bioethical violation and negligence by the P2P Panel knowing that the non medical therapy of GET is in fact harmful to ME and CFS patients.

No where on the NIH Pathways To Prevention Systematic Review
For ME and CFS does it make any reference in regards to “Informed Consent.” The goal of Informed Consent is for the patient to be an informed participant in their health care decisions including information of all of the available treatments including the benefits and the risks, so the patient can make an informed judgement or decision in regards to the treatment including whether or not to participate.

Further Info regarding Informed Consent:

https://research.uncc.edu/departments/office-research-compliance-orc/human-subjects/informed-consent

https://depts.washington.edu/bioethx/topics/consent.html

I searched even further to see what the requirements are for authors writing a systematic review in regards to informed consent.

The Journal Of Physical Therapy which endorces the ICMJE guidelines has a page about “Information for Authors: Requirements for Systematic Reviews” which gives very easy to understand instructions in how to format a systematic review.  Proof that the principles outlined in the Declaration of Helsinki were followed are to be included in the “Methods” section of the systematic review.

If we take a look at the actual systematic review, which is the research protocol, no where in the ‘Methods Section” do I even see a mention of informed consent or the Declaration of Helsinki which is the “Ethical Principles for Medical Research Involving Human Subjects.”

There was also noted that there is no disclosure to non-medical lay people who will be participating in this process that the non-medical therapy of GET is harmful to ME and CFS patients which would be a violation of the Declaration of Helsinki

“GET” has also been known to be lethal as well. Brynmor John died immediately following Graded Exercise Therapy or GET as he was walking out of the doors of the gym at the House of Commons in England. http://en.wikipedia.org/wiki/Brynmor_John

This review was not checked and proof read properly before it was published online. If so, the authors would’ve noted those 3 studies, included the issue of informed consent, disclosure to the Non Medical lay people, as well as GET or Graded Exercise Therapy being potentially lethal to ME patients. That document is clearly negligent.

The Non-Medical Therapy of GET or Graded Exercise Therapy will not advance research via the NIH P2P Study for ME and CFS as it is a therapy that is harmful to ME and CFS patients.

This NIH P2P Systematic Review for ME and CFS patients MUST be retracted and MUST be canceled as it will not advance research as explained above, has bioethical violations, is negligent, and is harmful to ME and CFS patients.

Additional evidence has been recently written by an M.D. named Dr. Larry Baldwin, who is a Vascular Surgeon and disabled by M.E. for 20 years. Dr. Baldwin just wrote a guest post called: “Post Exertional Debility” which was surprisingly posted on the Solve CFS Initiative website (formerly known as the CAA). Dr Larry Baldwin explains post exertional debilitation in regards to this illness which happens to be the hallmark symptom of M.E.

http://solvecfs.org/guest-post-dr-larry-baldwin-on-post-exertional-debility-in-mecfs/

Furthermore, if I as an R.N. was employed by a center where GET or Graded Exercise Therapy was actually done, and didn’t double check this, questions this, and refuse to allow the patient to go forth with this, I could be sued as well as the doctor, my nursing license would be revolked if the patient became permanently disabled and unable to work. This would happen because of all of the documentation and proof that GET or Graded Exercise Therapy is indeed harmful to M.E. patients. This is the reason patients are unseen, because they are homebound because of this.

Lets look at the common sense factor here.  The authors used 6 different “CFS” defintions as part of their guide to write the NIH P2P Review for ME and CFS.  Out of the 6 of the defintions, 5 of the definitions point out post activity, post cognitive, post exertional, and post exercise debilitation.

So if 5 out of the 6 defintions say that patients experience debilitation after anything that has to do with any type of activity, then why is GET or Graded Exercise Therapy being used as a non-medical therapy in the NIH P2P Study for ME when its quite clear that Graded Exercise Therapy will harm the patients?  Quite frankly, this is no different than the Tuskeegee Syphillis Experiment!

Reknown ME and CFS researcher and clinician Dr. Paul Cheney was quoted as saying at an Invest in ME conference in May of 2010: “The whole idea that you can take a disease like this and exercise your way to health is foolishness… It is insane.”

I agree with Dr. Cheney, because I know, I am a patient with this illness and I like many of the rest of us patients with this illness have tried exercising our way back to health. If we were all able to exercise our way back to health, we wouldn’t be disabled and homebound, we would’ve returned back to work years ago!

No one in their right mind would want to be in the condition that these patients are in, I can assure you. Just like Dr. Cheney said, trying to “exercise your way back to health is not only foolish, but it is insane! Thus, there you have my opinion regarding the NIH P2P Study for M.E. and CFS, its nothing less than insane!

I myself, see this not just as a patient, I see this through R.N eyes, and this is unacceptable, and there is no excuse for this. M.E. patients have suffered terribly and unnecessarily for 20-30 years and unfortunately at the hands of incompetent and non-compassionate medical professionals.

For this patient group to continuously suffer because of faulty and negligent illness criteria and non medical therapy, is getting beyond negligent, it is a crime.

All health care practitioners, including myself because I made the promise of “Do No Harm.”

“Do No Harm” means we are supposed to help patients, not harm the patients.

Unfortunately, “Do No Harm” became virtually non-existent when it was thrown out of the window 20-30 years ago for patients diagnosed with M.E. or CFS.

M.E. patients will continue to suffer harm if the NIH Pathways To Prevention Systematic Review for M.E. and CFS is not retracted and the December workshop is canceled. The reason M.E. patients will continue to suffer harm is because of the lack of information regarding GET or Graded Exercise Therapy and because of the non M.E. expertise people who will be participating in the study.

 

“The Other Side Of The Stretcher” (c) 2014

This blog is not for medical advice.
For medical advice, you must speak with your physician!